How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method

Abstract

The objective of this study was to explore the experiences of men with paraplegia with regard to how they choose activities. The study involved a qualitative research design, based on a phenomenological-hermeneutical method. The findings revealed that the activities participants were choosing could be on a continuum between the individual's self and the influence from their environment. On this continuum, the choice to perform activities was influenced by two mediating factors: the individual's activities performed during their life-history, and their activity challenges for the future. We conclude that choosing activities is an individually constructed internal process of negotiation. Feelings of resignation and revolt appear in combination with feelings of justice and injustice when balance is not found. This knowledge provides a better understanding of the impact of spinal cord injury, sheds light on the development of distress after spinal cord injury and sheds new light on individuals' feelings of participation.

Exercising Choice and Control: A Qualitative Meta-synthesis of Perspectives of People With a Spinal Cord Injury

“…Participants were forced into passivity by social expectations of compliance, overprotection, being given choices that were not genuine, and environmental barriers. Worry about being an imposition on others 30,43,48,53 or potential retribution if they were not friendly 50 diminished their power and, hence, decreased control over their life. Some participants described their experience in institutional care as being at the "mercy of staff" 41(p611) and because of their reliance on caregivers 28,43,48 they placed their needs secondary and did not complain.…”

“…48,49 However, to ensure security, participants could also make a conscious choice to be passive and accepting. 31,42,53 Passivity was encouraged when participants found themselves obligated to permanently adopt roles they were "steered" 53(p652) toward by well-meaning family members or health professionals. 30,38,48,53 When participants were not properly included in decisions about role choices, they were perceived as ingenuine.…”

“…31,42,53 Passivity was encouraged when participants found themselves obligated to permanently adopt roles they were "steered" 53(p652) toward by well-meaning family members or health professionals. 30,38,48,53 When participants were not properly included in decisions about role choices, they were perceived as ingenuine. 30,53 Assumptions made by health professionals could lead to the underestimation of need for services, 47,48 poor design of buildings, 27 or lack of access to technology 54 and forced participants to be dependent when they otherwise would have been autonomous.…”

“…30,38,48,53 When participants were not properly included in decisions about role choices, they were perceived as ingenuine. 30,53 Assumptions made by health professionals could lead to the underestimation of need for services, 47,48 poor design of buildings, 27 or lack of access to technology 54 and forced participants to be dependent when they otherwise would have been autonomous. To change their environment, or to access services, 40,41,48 participants were required to "fight," 41(p613),50(p774) "revolt," 53(p655) and be "stubborn."…”

Shifting the balance: conceptualising empowerment in individuals with spinal cord injury

“…The stories reflected considerable variability in how participants contributed, perhaps owing to differences in personality, experience and place. Van de Velde et al (2013) suggested that persons with SCI benefit from being able to choose activities that fit with their sense of self, their environment, activities they did before their injury and expectations of the future. What seems to be important is not how people contribute, but rather that they just do so.…”